redrightreturning

redrightreturning t1_jc0ubqc wrote

Nurse here… Chemo can cause nerve pain. Talk to the provider who is ordering your chemo and get a prescription for capsaicin patches. I think they are certainly worth a try, and very low risk.

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redrightreturning t1_j0kclpj wrote

Hi this is a great question! I used to be a speech-language pathologist, specializing in aphasia. Researchers have used TMS (and TDCS) to help people with aphasia recover. I know some folks who conducted some of that research and also sent a couple of my clients to participate in TMS clinical trials.

To my knowledge no one has studied giving people aphasia on purpose. I think it would be kind of unethical to purposely try to impair a patient’s function, even if temporarily.

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redrightreturning t1_iymfsy4 wrote

Yes this is exactly what I meant! Thank you for adding your knowledge.

I will say the shocks hurt pretty bad. The first time they told me it would be like getting punched in the arm. Well it turns out I had never been punched before so I had no idea what to expect and almost passed out. Subsequent times I was ready for it and it wasn’t as bad.

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redrightreturning t1_iymfc00 wrote

Not sure what you mean. They had several arms of the experiment. I think a control, a low dose, and a maybe one or two higher dose. After a few months the results seemed to indicate that some people in the experiment were producing antibodies. The fda told them they could expand the study to do an additional round of vaccines - like a booster. When the study was unblinded I found out I was in the highest dose arm of the study and had also received the booster.

Running experiments is hard and costly- especially ones that unfold over a long time son they can’t go on indefinitely.

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redrightreturning t1_iyme288 wrote

Yes I knew. I was paid $50 or $100 per visit I believe (this was 15 years ago). Iirc I received a basic check up first and then over time 2 or 3 doses of vaccine. most visits were a quick blood draw. The study lasted over a year and I think I probably went in about 1-2x/per month.

They did explain the risks. That is a normal part of the consent process for any human subject participating in a study.

To be clear, there was NO RISK of being exposed to HIV, if that is your concern. The vaccine didn’t contain any HIV.

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redrightreturning t1_iylhka9 wrote

Thanks for engaging. I’m glad you don’t care, and still therefore took the time to write about how much i shouldn’t care. Since you took the time to write, I thought I’d give you the same courtesy.

I think what annoys me is when people assume you are male, it’s like male is the “normal” default. But actually, being female is default for me, and like half of the world. Just like it would be weird for someone to assume I’m Chinese (I’m not) or Indian (I’m not) just because there are a lot of Chinese and Indian people in the world, it’s weird to assume I’m a man. There’s no benefit to assuming my ethnicity, and there is likewise no benefit to assuming my gender. Furthermore, it takes no more effort for someone to write “they” instead of “he”. The only difference is that it means they weren’t assuming things about my identity.

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redrightreturning t1_iylaaw8 wrote

No, no one was exposed to HIV, that would obviously be unethical. The way the drug worked was that it was supposed to mimic some of the HIV proteins and cause your body to make antibodies to those. The study was also experimenting with a novel mechanism of injecting the vaccine, using an electrical sock (for lack of a better word) to facilitate the uptake of the vaccine.

*shock, not sock

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redrightreturning t1_iyl6e6k wrote

You’re so welcome. I encourage everyone to go participate in clinical trials. It’s so cool to be a part of the process. And usually the researchers are so passionate and appreciative. Participating as a subject humanizes science and makes it more tangible for people who otherwise aren’t in touch with it.

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redrightreturning t1_iykqkj3 wrote

I was in an HIV vaccine trial like 15 years ago back in NY. The results at the time had seemed promising enough for the FDA to extend their trials. When the study was unblinded it had turned out that i was in the highest-dose experimental group, meaning maybe I’m immune to HIV, but afaik i was never exposed to the virus so it’d be hard to know for sure. Anyway, I’m always excited for more research on this subject and I feel a connection to the experimenters and study participants working to put an end to this god-awful disease.

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